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Aussie Barb
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Posted: Thu Jun 25th, 2009 14:15 |
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Thank You to All..
MP History: page 70. summary page 71 .
MP: 4 years and 9 months
No antibiotics since 8th February
No Benicar since May 24th.
Other meds: 1 aspro for pain or headache as needed. maybe 1 or 2 per day.
-Chelated Magnesium 500mg x 1 only as needed for slight muscle spasming or muscle soreness or start of headache. maybe 1 per day. frequency of headaches is decreasing further.
-Quercetin: 250mg x 1 only as needed for throat mucus/choky cough. maybe 1 or 2 per day.
Light: not avoiding light. Wear NoIRs in bright light.
Indoor Pool: Daily for 8 months for strengthening and mobilisation:
around 60 minutes work daily.
Thursday 25th June:
Personal experience update:
At the Drs visit, Dr noted re "Balance".
which made me think more about it. I need to 'hold on' to step on the scales or to put my slippers on, walking or standing. etc etc.
I have been doing 'balance' exercises in the pool.
I tried to 'walk a line'..... without success. so I did some research.
Some of the most commonly administered Field sobriety tests include:
walk-and-turn (heel-to-toe in a straight line).
one-leg-stand.
modified-position-of-attention (feet together, head back, eyes closed for thirty seconds; also known as the Romberg test).
finger-to-nose (tip head back, eyes closed, touch the tip of nose with tip of index finger).
I record these here as tests that I currently have a problem performing, (while completely sober of course, as I am teetotal) so that I can judge my improvement over time. Interesting.
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Today I can say that since looking into the Amygdala Retraining, Each day I am doing a little more walking, standing etc.. Before this, the pain in my back, hips, upper legs stopped me every time. That pain has decreased to the point of my now being able to feel the heavy fatigue holding me. This change is so very encouraging to me.
Today I was able to walk further without sitting. I stood still to break when I needed to, and didnt have to sit to break. (all with walker). aching muscles each night with what I am doing each day ever since I started at the pool.
I am meditating, but not really at this stage actively using any special techniques apart from knowing what it is and does, and keeping myself busy in other thinking, doing more on land walking and standing to strengthen and improve. I am achieving and having hope for more.. which of course is a far cry from where I was when I felt stuck and hopeless. Just to know, has been like flicking a switch. This may or may not be helpful to others.
All best wishes, Barb ...
Sunday 28th June:
I went to the shops twice this week. Walking is hard work, even with the walker but I am trying to strengthen the "standing up" muscles by standing as much as I can. Taking magnesium also helps to keep the muscle pain managed. (I found out by neglecting to take it)
It is winter here. The daytime temps are between 16*C to 24*C ie 60*F to 75*F
We go to the shops in summer clothes and others are all rugged up and the stores AC is on warm. I am hot in no time, and feel sick from being overwarm. It is a relief to get out into the fresh breeze.
With the walker, I walk and sit around the garden, gazing at the gorgeous flowers, - gives me neverending pleasure.
Stress increases RUQ IP. Meditation to settle.
Quercetin once or twice per day for frog in the throat that will otherwise develop into choky wheezy cough.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Mon Jun 29th, 2009 06:39 |
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Monday 29th June:
Everything is relative.
The pool was closed to lap walker/swimmers on Saturday and Sunday because they had swimming club. I walked around the yard etc with my walker as often as I could and as much as I could to try to strengthen my 'on land' muscles. and sat in the shade in the garden inbetween.
I have been finding now that I can walk with less pain and I can walk for longer without needing to sit to rest. However, last night, I had high level pain in R side/hip/flank. relief from a hot shower and aspirin.
Then we went to the pool again today. The 2 days absence seemed ages since we had been. and ooohhh the pool seemed easy compared to walking on land for 2 days. (even if it was a bit cold)
I have been managing better with the visitor staying. less stressful, so I am not sure if I have improved or.... ?
Went to the shops just now and found that it is getting easier for me to get around than it was. I am getting some clothes together to wear "when I can walk". I realised that not only am I working towards a future, but I have now started planning for a future!!!!
Thank You All, best wishes, Barb ...
Tuesday 30th June:
I am tired today, so havent done any extra walking.
As I am more able to get into and out of the car, I have become aware that my R leg is stronger and more able than my L leg. Apart from when I am really tired, I can lift the L leg into the car, but to get it out, my leg cannot lift the foot, it drags out over the ledge. Now that this is continuing, I am quite shocked today to realise. (some work needed there)
Even though I am doing a lot more, and am seeing improvement for the work, it is hard work, and I have a long way to go. and to think that I was feeling worse than this on the MP meds.
Thursday 2nd July: 4am.
I have decided that coffee may be affecting me adversely. Since I am not on MP meds, I have enjoyed some coffee. but I have also had some inexplicable bouts of malaise and depression which I am tying to the coffee. so, no more coffee for now.
Yesterday felt like a relapse.. depressing in itself. didnt go swimming. DH has been doing some housecleaning, and my not being able to help has also been depressing, as much as it is good to be getting some things done. By afternoon I was able to hold the hose for the window washing and do a very little. and with the usual payoff of very sore aching muscles. I seem to be out of the 'relapse' feeling again now. will see what today brings (with no coffee).
Friday 3rd July:
-sludgey in the morning. went to pool. I am getting better with practice, at my attempts to freestyle.
-I notice I have some more stability standing in the shower. sometimes I still have to sit to dry.
-weight goes down 1 and then when I am not well, it goes back up 1. body is showing definite remodelling.
-red face. on exertion eg from showering. dressing. doing.
-toes inflamed, nails need digging out still, but is less often.
-knees still a problem.
-talbone still a problem to sit in the car for more than 20 minutes.
Interesting Note re neuro:
As I am making the changes and moving towards the future, I have noticed an unusual 'moving away' from the attachment I have had to having some very few small decorative items around- whether it be some pretty shells, a string of small bells, etc.
Later Edit: I realise now that these "pretty things" were my window to the world while I have been housebound all of these past years.
While I have sorted things like this in my mind, I am as yet unable to physically get into the sorting. Have placed them all in one place so far.
Wanting to participate in caring for my surrounds now. so far am only able to direct proceedings with a very little participation.
Saturday
Daughter is visiting and says while there is a sadness to see Mum letting go of these small things and pretties and 'growing up', there is gladness to see me moving forward.
Sunday 5th July:
Some notes: in pool:
-I can walk, run even, in the pool. But... I cannot sustain it because of chest pressure.
-I can do squats, and balance, and various exercises... that are impossible for me to do on land.
-and... I could do them 'forever', But I have to be careful to count and do only so many, because of the sore muscles that follow later.
-when I started at the pool, I couldnt bear to have my face in the water at all, because of breathing. Now, I can duckdive.... each day for practice at holding my breath.
-when I started at the pool, I couldnt do any 'face first' swimming. I think it may have to do with the inflexibility of my back, and the heaviness of my swollen arms. I have been practicing the arm strokes alone for months, and have now been practicing a little actual, albeit yet awkward, freestyle each day.
-stepping out of the pool is easier than it was. but still only stepping up with the L leg yet.. ie with a R hand rail.
Generally, I am a lot stronger than I was when I started 8 months ago. I can keep going continuously for the 45 minutes of swimming/walking and do the 15 to 20 minutes exercise.
4.20pm
I am frustrated with the sludgey feeling, wishing always to be able to do more. and then.... I just read back to the top of this page. and there it is. Previously, pain in my legs/hips/back held me back even more.
Tuesday 7th July
Being Thankful for what I can do each day. Using the techniques to focus. We went to the beach and I walked back and forth with my walker stopping as needed to refocus. I have sore muscles in my legs, hips, back, - all indicative of my having done what I have.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Deedee
Member in Phase 2
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Posted: Mon Jun 29th, 2009 13:22 |
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Ahhh, planning for the future...spending time in the Garden. Wonderful
Deedee
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Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
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Deb Grabetz
Member in Phase 3
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Posted: Mon Jun 29th, 2009 16:39 |
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Ah Dear Barb...walking sounds so simple to many...and how we learn to appreciate being able to walk again. I'm hoping that you continue to grow stronger each day and that your legs will once again become familiar to your daily needs.
When I went through my period of weakness, I wondered if that's what happens with babies learning to walk...are their tiny legs weak from not being used in that manner and they build up strength to learn this new and marvelous feat...or is it actually a learning process? Something to ponder...
xo Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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dizzyblonde
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Posted: Sun Jul 5th, 2009 06:46 |
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Do you know what else that I can notice, Barb? When I first 'met' you you could only give 'yes' and 'no' answers on the boards because you were too tired to write responses. Look at the length of your posts!!! Go Barb  what an inspiration to all of us 
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phase 1 30/12/08. Phase 2 lost start date ? mid feb 2009! FM, 5 x MVAs, beginning CFS, peripheral neuropathy, ticks, depression, endocrine issues, irritability, anxiety, currently on phase 2, level 3, 100mg mino cycle 2.
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Aussie Barb
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Posted: Fri Jul 10th, 2009 20:40 |
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Thank You All ..
Update: Saturday 11th July. 5.40am
To achieve mobility and function, each day I plan ahead some things I can enjoy doing, and I can do safely and reasonably, and I take everything a bit at a time, so that I dont become overwhelmed with the task I have in front of me.
Each days walking with the wheel walker is done where it suits that day. It may be at the shops, or the local neighbourhood, or the beach, or some of both. When I walk, I stop for rests and refocus. I am really enjoying the crisp freshness of winter air and the pretty flowers and my pond.
Walking, swimming, exercise at the pool is good for the sore muscles after a walk, but the soreness comes back on land. but of course muscle soreness is a good sign. I take magnesium and pain med when necessary.
I am putting some practice into lifting my Left leg while sitting so I can lift it out of the car better.
I am getting stronger with standing still.
My hands arent as tight to close, or as sore, as they were. The L is still tighter.
I am thinking that the ramp to the front door can go now, because I could hold on to the doorway to step up or down now. I will have to do it carefully, but it is a step to further progress.
I am taking more interest in the house, but cannot do much about it myself yet.
best wishes, Barb ...
Sunday 12th July
walked with walker early am. I was going to go to the beach instead of the pool, but decided I am wanting more pool today. enjoyed the pool.
If I begin to do overwhelmed at the task I have ahead of me, I remind myself that this is the Reality of the work I have to do, and I am doing it. I didnt get like this overnight, and I have achieved a lot already, so I can do this.
I have a tendency to push myself too hard, and as big of an effort as it takes, it can be difficult for me to see that I am doing it till I suffer the consequences. I am suffering some consequences. so I am taking it a bit easier this afternoon. It is Sunday and I have done 1.5H at the pool of walk, swim, exercise. At dark I will go out and walk a little more on land.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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tom
Member in Phase 3
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Posted: Sat Jul 11th, 2009 00:32 |
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Barb,
Keep up the great progress. Always great to hear from you
Tom
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CFS 125D50, Ambien NoIRs Ph2 03/06 Ph3 10/06 last 25D22 Jan06
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Deb Grabetz
Member in Phase 3
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Posted: Sat Jul 11th, 2009 12:36 |
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Barb wrote:
I am taking more interest in the house, but cannot do much about it myself yet.
Barb, That is a good thing to hear, the ambition is a good sign, even if you can't do much about following it! The brain is wanting...!!!
My massage therapist and I just talked about this muscle soreness. I have noticed for a very long time now that if I can get out and walk (or treadmill) as much as I can allow myself that day, that in the long run of things I always feel so much better. I have really been pushing myself to do this because quite frankly, I HATE EXERCISE!! lol... sometimes I will feel so crummy afterwards and she told me that it has to do with lack of exercise, that the muscles are giving off toxins, (toxins which we have due to lack of exercise, things we eat, breath)...and by the next day I can notice how much better I feel. Seems similar to how the MP works with our meds...whew I fight those die off days but the good days are great!
Keep that walker movin'...you're groovin'...to the beat of gettin' well!!!xoxoxoxoxo! 
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Aussie Barb
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Posted: Tue Jul 14th, 2009 05:53 |
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Thank You All ..
Update: Tuesday 14th July. 2.40pm
I am fortunate to live in a virtual paradise with so much around me that I appreciate and enjoy, all supportive of my quest for recovery. Family, pool, garden, beach, supportive friends and more.
To achieve mobility and function, I am having to work really hard. I am putting all my concentration and efforts into my recovery. It is a huge effort for me and it is time consuming. I have always been a hard worker, but this is physically and mentally hard work! I have been shocked to find how hard it is to do what would have once been small tasks.
At times I do become anxious, but there are only 2 choices, forwards or backwards. I remind myself of the improvements I have made in 9 months of going to the pool, of how doing any thing makes it easier to do with time.... that I cannot expect to do it all at once. and that I must be as kind to myself as I would be to anyone else. and to stay calm.
best wishes to all, Barb ...
Wednesday 15th July:
Good news:
-random fasting blood sugar level: taken this morning: has dropped 1+ points from the forever morning usual. is 6.4 (5 to 8 is ok)
-swelling: looks to be decreasing. small wrinkles in skin accompanied by small weight drop -to be confirmed in another week.
Friday 17th July:
Have had a couple of days of downtime in one way and another, due to family. It has given me time to assess and reflect.
I have been expecting too much too soon, hoping too hard, pushing too hard and stressing. All adds up to no good... making me worse. so I have to learn to be patient as far as time and effort go. again. when will I learn it for good.
I have cut back on the physical and mental and things are starting to settle again.
Went to the pool again for 1H+ as usual.
Saturday 18th July:
This is better with me taking the pressure off. symptoms settling.
Going to the shops and the pool today.
Neighbour gave us a wheelbarrow planted with flowers for my pleasure. wondrous.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Sunbeam
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Posted: Tue Jul 14th, 2009 08:36 |
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Hi Barb.
I think what you have said here is so much on the mark.
I must be as kind to myself as I would be to anyone else. and to stay calm.
Why do we go through life thinking that we are the ones who need to stay well because we can't look after others if we don't? We would understand if others were sick and we would want to support them, yet we find it so hard to accept that right at this moment, we are the ones who need the support and kindness.
It takes a long time to accept that. I hope I have at last come to grips with th concept too.
I'm glad you have and that recovery although it may be hard work now seems attainable.
Keeps up the great attitude,
Lynn
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Deb Grabetz
Member in Phase 3
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Posted: Tue Jul 14th, 2009 12:06 |
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Dear Barb,
You have an incredible "core" that keeps you going, you are surely a role model to many...I personally feel blessed to cross paths with you...
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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expate
Member in Phase 3
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Posted: Tue Jul 14th, 2009 15:10 |
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Barb,
Know that you have lots of  in Oklahoma!
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Vicki SA
Member in Phase 3
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Posted: Thu Jul 16th, 2009 05:30 |
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Good on ya Barb!
It is really nice to be able to make effort and find that things do improve with time!
For most of us, this just wasn't a reality before MP.
All the best and Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 30mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Aussie Barb
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Posted: Mon Jul 20th, 2009 23:36 |
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Thank You All ..
Update: Tuesday 21st July. 8.30am
No antibiotics since 8th Feb.
No Benicar since May 24th.
Other meds: 1 aspro afternoon and bedtime for walking/exercise induced muscle soreness.
-Chelated Magnesium 500mg x twice a day for slight muscle spasming and muscle soreness.
-Quercetin: 250mg x 1 only as needed for high IP. less than 1 per week.
The scales confirm that the small weight drop last week was valid. I am still having difficulty believing it. working on that. nothing I had done up till now had made any difference.
When we go to the shops I do my walking there, and if we dont I practice walking around our locale (with wheeled walker).
Daily walking swimming laps at the indoor pool for 1H + exercises.
Havent been to the beach lately because I choose to go to the pool daily and they are in opposite directions.
IP has slowed, continues, with an increase in level at times. I am managing it with the retraining techniques.
some eg. ear pain down into glands and throat, cough minimal, RUQ gut flares, sunspots still processing, muscles and joints.
As the time goes by and I experience incremental improvements, I can also experience the appreciation of it. That is an achievement in itself. ie In the first place, doing the walking is one thing, but appreciating it is sometimes difficult/impossible because I can be really pushing thru for it to happen. When I'm not having to push thru, I am able to experience and appreciate the true improvements. I am also working on making my expectations more real for me.
I have small wrinkles in my skin, noticable arms and feet... meaning that the swelling is decreasing. I think/hope that my physiology is improving, that the inflammation is decreasing to allow better function and to eventually eliminate the swelling/lymph buildup. I have been waiting for so long to get over this hump. It has been a long road, longer than I thought, but it is good to see, feel each small change.
We had the ramp taken from the front door and are looking into a little half step for there now.
I am enjoying my flowers and the pool and the sunny days.
best wishes to all, Barb ...
Wednesday 22nd July
I have done it again. trying to make it happen. instead of using the techniques. and I am paying for it. back to the drawing board. resting, apart from the pool.
Friday 24th July
Relaxing .. ie stopped stressing.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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vda51
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Posted: Tue Jul 21st, 2009 03:32 |
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| Very heartening to hear barb, thinking of you,you are an inspiration
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Reiters Syndrome 10yrs 25D=27 1,25D=43/ Crp56.33/ WCC8.7/ lymphocytes 1.2/ BP 91/59 NoIRs/ LIGHT & D AVOID| Beni Mar05 Mino Apr05| FEB O8 25D=6 DEMI 112MG
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HeatherK
Member in Phase 2
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Posted: Tue Jul 21st, 2009 11:08 |
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| Good to hear of improvements Barb! Seeing Wrinkles is a real boon in your recovery!!!
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CFS - crashed 5 yrs+ before diagnosis and starting MP.2YEARS ON MP Sep 09. (Sept 07 25D=24pg/ml, 1,25D=47.5pg/ml) Sept/09 25D= 7.6 Started Phase Two Mar 4/08. Mod Phase 2-Apr/09. In blackout home still, wearing NoIRs, presumed celiac.
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Karon
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Posted: Tue Jul 21st, 2009 17:12 |
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Good Morning Barb,
I was wondering if you have ever had a lymph massage? I looked it up on the MP site and found that it helps some. You are supposed to feel worse before you feel better. My MP Dr. wants to give me one in about a week and I am a little nervous but very interested......what is your experience/opinion????
Sounds like you are doing just great....better day by day.  
My biggest IP now is exhaustion...sleeping a couple days for 15 hours a stretch.
I am not complaining by any means...and am grateful for the NO PAIN. 
I would very much like your thoughts on lymph massage.
Love to you..
Karon in Ca.
Last edited on Tue Jul 21st, 2009 17:13 by Karon
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LYME,PTSD,RA,CFS,ChronInflamDisease,
Depression/Anxiety
Naproxen/Tramadol/Valium/Flexiral/Otc sleepaid, PRN
|125D =73 25D=20(May08)| 25D=14.4(Jul08) 25D=14(June09)
[PH1-Apr08| [Ph2-Aug08] [Ph3-Apr09]
Lowlux Home Work NoIRS NoSun covered up
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Aussie Barb
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Posted: Tue Jul 21st, 2009 20:35 |
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Thank you Karon. My thoughts on "lymph massage".
Firstly, speaking of any massage.
For some, massage has exacerbated their symptoms.
see this topic on Massage for some pros and cons.
The FAQ What causes swelling? has some good links and explanations.
For me personally, my tissues have been so sore to touch that I couldnt let anyone near me anyway.
9 months of 1 hour daily water pressure and movement in a pool are only ever so slowly resolving my lymph issue, which suggests strongly to me that keeping the IP at a tolerable level by all possible means is essential to keeping your physiology functioning as well as possible to prevent any buildup causing damage to your body.
I have small wrinkles in my skin, noticable arms and feet... meaning that the swelling is very slowly decreasing. I think/hope that my physiology is improving, that the inflammation is decreasing to allow better function and to eventually eliminate the swelling/lymph buildup. I have been waiting for so long to get over this hump. It has been a long road, longer than I thought, but it is good to see, feel each small change.
suggest this topic at Lifestyles for further discussion. thanks.
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Karon
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Posted: Tue Jul 21st, 2009 21:44 |
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Thank You Barb!
Excellent info on that thread.
I will Proceed with caution.................
(I read all of your posts, as I have told you before).
"The wrinkles" are an awesome and welcome sign to most of us...
Thanks again for the point to the great thread
____________________
LYME,PTSD,RA,CFS,ChronInflamDisease,
Depression/Anxiety
Naproxen/Tramadol/Valium/Flexiral/Otc sleepaid, PRN
|125D =73 25D=20(May08)| 25D=14.4(Jul08) 25D=14(June09)
[PH1-Apr08| [Ph2-Aug08] [Ph3-Apr09]
Lowlux Home Work NoIRS NoSun covered up
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Sunbeam
Member in Phase 2
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Posted: Thu Jul 23rd, 2009 04:40 |
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It is lovely to hear your news Barb. Lots of positives in there and some areas need more time. It is amazing that you are able to walk so far now. I am so pleased for you. Your spirit of perseverance is a lesson to us all.
Enjoy the flowers and the wildlife,
Keep up the good work, Lynn
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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